Thank you for replying Angie!
I in the past have worried myself sick, before going to college i took the semester off because i was going to have the surgery. a few weeks before we thought it would happen my doctor told me about desmoids and this was the first time I heard of them! (This was roughly 6 months after being diagnosed and everyone told me to not search the internet or I'd worry myself). It scared me a lot, but wasn't the reason the surgery would be rescheduled a year later. I certainly hope I will live many years. I hope to travel in my mid 20s and have children in my late 20s. Figure I'll try have some fun before anything drastic can crop up.
Oh also everyone I almost forgot there's this new thing called CRSPR! Search it when you get the chance! Scientists have developed basically a virus that can search for bad cells with mutations and with RNA it works to replace the genetic mutated part of the cell, in our case FAP. One of the first subjects to be tested was also an FAP patient and it is now cured from their body, no more worying about all the bad side effects that are apart of FAP. I have no idea what this could mean for those already with desmoids but hey, its worth a google search. My mom just told me about it yesterday so I haven't done much research but I will update! Its also something not currently in the US I believe because it uses stem cell research which I don't believe is permitted here.